LVSI post-hysterectomy

Hi Robyn 

Yes am very scared , I didn’t see my surgeon yesterday and I got info that was confusing .

i hope your mum is well and your amazing it’s a scary time but you have loads of support here and your mum x 

How funny! I was just about to reply to you on your thread. It seems the news is very similar at the same time.

Sending lots of positive vibes to you. I know it's hard to say 'don't worry', but of course you are worried. Just take it day by day. Have you had radiotherapy before? Unfortunately my mum had 1a breast cancer last year too, so she had 5 weeks of radio for that too. It is daunting, but all I can recommend, is to make a chart. You can find them online, or ask a family member/friend to help you make one. Each day you complete your radiotherapy, draw a big cross through it. It helps you see the light at the end of the tunnel.

Also, re the results: my mum had her results via the phone from her Macmillan nurse, and is seeing her surgeon on Friday for a full appointment. Will you get more info from your surgeon soon?

Ps congratulations about the wedding! Exciting! 

Robyn x

Hi Robyn x 

no I will see them at guys , I saw an oncologist and my Macmillan nurse . Funny thing ever-time I go on my own I see the nurse and I know it’s bad . I was assuming ( which I shouldn’t have done ) that it was a follow up with my surgeon but it wasn’t .

the oncologist said it was still grade 1 and the Macmillan nurse interrupted her cause I lost it and started to cry and loose myself . Even when I had a chat with her after I still left confused , my sister was so unwell and couldn’t come and my H2B was at work . 
I will now on , never go on my own after test or procedures and will try and get someone with me , cause you need the support , someone who will ask questions and be your voice when you cry .

until I see the Guys  team and get my treatment further I don’t know . I am scared , lost and confused I read the replies on here and am starting to understand a little but I am still uncertain .

your idea is cool and I will do that and focus on getting well and beating this ASAP xx 

i will let you know as soon as I do x

i hope your mum is ok really and be near her xx we need those hugs xx

Hello LT167 

The same thing happened to my mum today - she is recovering from her hyst still, and my dad was away on business, and I am at work, so she received the results on her own also. So sorry you went through that alone, but atleast you know next time to make sure you take someone, even if it's so they can take notes/ask the questions you are struggling to ask. It honestly is so confusing trying to understand all of it.

Try not to panic - I believe the radiotherapy is normally recommended to ensure the area is free of cancerous cells and to prevent it spreading to lymph nodes. I would assume that due to cancer being found in your womb, shows it has spread just slightly, so the radiotherapy is necessary to be safe. They call this adjuvant therapy I think? See if this helps: https://www.cancerresearchuk.org/about-cancer/womb-cancer/stages/stage-1

Yes, please let me know how you get on. I will let you know what my mums surgeon says on Friday too!

Exactly - you can do it. Let yourself have a day or two where you cry and feel sad, that is totally normal. Crying every day is normal too! Just let yourself have some positive moments.

Make sure you have some relaxing time this evening - watch something you like and have a nice big cuppa (if you drink tea).

Sending lots of hugs to you xx

Abs to you and your mum hun xx yes please let me know xxx and I will you xxx ️

Hi  and  I am sorry that your mum (Robyn) and yourself (LT) have received this news. I too was told this at my post-hysterectomy check up in 2017.  I had endometrial cancer Stage 1a Grade 2 with LVSI which did shock me as I had never heard of LVSI and hadn't at that point found this forum unfortunately.  Having been told that the surgeon was confident all the tumour had been removed I thought that would be it!  

I went on to have 25 sessions of external radiotherapy and 2 external brachytherapys and completed all of this in October 2017.  It was tiring of course and as I already have M.E. and Fibromyalgia perhaps a bit more so than others.  I am also agoraphobic and can't travel on public transport so my husband drove me and my daughter came with me too every day for the 5 hour round trip!  I was unlucky in that the side effects of nausea and diarrhoea started on the 3rd day of treatment but for many it is much further on if at all.  And you will be seen regularly by a doctor or nurse who will prescribe medication to help with all of this.  I also had regular blood tests to check on a few things. Also unfortunately I have been left with some bowel and bladder problems but I already had IBS so feel it has been made worse by the treatment.  Many others find further on they have no problems at all or some mild ones.  The treatment itself is painless and only takes a short time, 10 minutes or so after they have arranged you into the right position on the table.  You will have to drink 4 cups of water beforehand and then wait for a full bladder and also some have to use enemas for an empty bowel but I didn't need them after the first week as my system sorted that out itself!

For the first 2 years I had 3 monthly checkups with a chest Xray and blood test at every other check up.  I had one 4 monthly check and am now on 6 monthly check ups for another couple of years or so.  Fingers crossed so far so good, although I will be honest, I am not one of the most positive people and I do dread recurrence on a daily basis but that is me.

There are others on here who have also been given the same diagnosis and I am sure some will be along to give further advice and information.  One of the important things is to drink plenty of water to keep yourself hydrated and rest as and when you want/need to, the tiredness carries on for a while after treatment ends and this is quite normal.

Sending hugs to you both,

Lesley xx

Hi LT167 

This is my first post in this group but I have been lurking on here for a while and have found the comments and advice of the wonderful ladies very helpful and reassuring.

I am prompted to write now having read your posts as I also have just been recommended 5 weeks of radiotherapy having been re-graded post hysterectomy as Stage 1B LVSI Positive.  I am also being treated at Guys.

I had my operation in mid January and got a call two weeks later asking me to go in for an appointment that day.  I thought it was just for post-op check/surgical discharge.  I couldn't make the appointment so went the following week where I saw a different surgeon who told me that they had found the cancer was more advanced than they had first thought and I would receive an appointment with an oncologist to discuss further treatment.  He wouldn't tell me any more than that. I freaked and spent the next three weeks trying to get further information. Although my CNS did try to explain on the phone, it just confused me more.

I eventually had an appointment with a very nice doctor last week who tried to explain it all and I do understand better but am still somewhat confused. It is a shock and I agree with you about confusing information.  They all seem to say different things and I still don't really understand what LVSI is.

I am going back tomorrow to sign the consent form and hope that treatment will start soon as I just want to get it over and done with.  I am really scared about the whole thing. I know that the treatment doesn't hurt but there seems a lot of hanging around (and water drinking) and I am really scared of the side effects.  I would love to hear from anyone who hasn't suffered from bad or long-lasting side effects.  Also any diet tips etc.

It is reassuring to know that there are others going through it at the same time with the same stage, especially as in the group at the moment, there seems a number of ladies having brachytherapy but not many with a low grade and stage having radiotherapy.  As a result, I was beginning to get paranoid and think there was something the hospital weren't telling me. 

LT167 If you are also being treated at Guys, we may run into each other.  In any case, please let me know how you are getting on.

I hope we sail through the treatment with minimal side effects and that you can get back to the important task of planning your wedding.  It is good that you have got something so big and exciting to focus on through treatment.

x

Hi jd276,  and ,

It's very daunting when you are told about the possible side effects of Radiotherapy and indeed the possibility of long term problems afterwards.  However do remember although the oncologists are required  to warn you about them not everyone is badly affected.  

It is 5 years since I was treated (actually 5 years to the day since my hysterectomy!).  I was Staged at 1a,  grade 2 but histology showed LVSI - something I had never heard of.   I had 5 weeks of external radiotherapy and 2 sessions of brachytherapy.  My oncologist at UCLH said she was going to "cook" my lymph nodes.  The daily travelling was tiring and those 5 weeks were arranged around my appointments but as compensation I found real companionship with other patients as we chatted round the water cooler. 

My planning scan showed I had a tendency to have a lot of wind in my gut  and I was asked to restrict my diet to low fibre foods and avoid things like beans etc  Not easy to eat mainly things like boiled carrots, mashed potato and white bread if you are a whole food kind of person, but  I had very few real problems with side effects during treatment .  Afterwards I had some bowel urgency which took a few months to settle down.   My bladder is still a bit untrustworthy but I am 82 now and I think much of that is due to my age!  

I made the mistake of googling LVSI and got a bit worried but I was reassured when I also read professional articles which made it clear that the treatment I was having was the recommended one.

I had 3 monthly check-ups for a while, then 6 monthly and my last 2 have been at a yearly interval.  With any luck my next check will be my last. 

The team in your radiotherapy department will be there to help you and answer your questions. .   Procedures do very a bit from hospital to hospital  and even in the same hospital doctors may have slightly different ideas.  Also every patient is treated as an individual  so don't worry if you are told something different from another person.  You can ask as many questions as you like on this forum - we have all had the same worries and are happy to help if we can. 

Evening ladies,

Thank you so much to each of you for explaining your stories. I have read them out to mum (she’s not ready to get her own account on here just yet, soon maybe!) and she was relieved to hear similar situations, it’s nice to know you aren’t alone.

LVSI seems an odd one! Never straightforward is it!

Regarding the diet, thank you for that info. My mum had to do the no fibre diet before her hyst - was horrible as we also eat lots of wholegrain and greenery! 

oldady and jd276, great to hear you’re getting on well after all of this. You’re so strong. Same to you Poppysmum27!

Love to the rest of you too!

I hope we know a little more once mum has the meeting with her surgeon on Friday.

Hope you’re all having a nice evening xx